I just realized that 3 months have pasted since I last posted on here. They have been a crazy 3 months at that. In my last post I had mentioned uncertainties and hanging on by a thread as I was not tolerating my feeds. I ended up spending a good portion of January inpatient due to ever worsening GI motility. I had some pretty extensive testing that did not give us any answers, which was frustrating. I was finally discharged not tolerating any better but forcing myself to push on with feeds because I wanted to get out of the hospital. I also had to increase my IV fluid to 1-2 liters a day. I now run fluids and/or feeds 20 hours a day, but thankfully I am back up to a healthy weight.
A few theories were brought up by a GI motility specialist I am now seeing in addition to my normal GI, one being there is an autoimmune issue and the others are all genetic issues which can be contributing to my autonomic nervous system dysfunction (aka gastroparesis and POTS).
I also saw an adult rheumatologist for the first time this week. I really liked him and even though I am sad to leave my old peds rheumy I am glad I have found a good adult one. He is changing my diagnosis. Right now he put Undifferentiated Connective Tissue Disease (UCTD) in my chart but that will probably change in the near future when some of the test he sent me for come back. The first one I am having an about a week and a half is a lip biopsy to check for Sjogren's Syndrome. He said there is probably only a 10% chance I have it but it can affect the nervous system and if that is the problem treating it will not only help my autoimmune problems but also the ANS ones as well. He is also sending me for skin biopsies of sores I get on occasion but we have to wait for one to pop up before we can look into that and that would be testing for Behcet's disease. Lupus is also on the table, The last thing he did was look at the capillaries in my cuticles to look for signs of Rayaund's damage which not only did he find but he let me look at. While this is not important in terms of treating that condition it may be a symptom of another autoimmune disease such as lupus.
The last major thing that happened this week was some pretty serious new GI symptoms that may mean I am bleeding somewhere in my lover GI track. I was pretty freaked out when it first happened but it seems to be getting better so hopefully it will go away but I am getting some stool test to make sure nothing new is happening,
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| I was at such a slow rate at one point in the hospital they used a med pump instead of a feeding one. |
A few theories were brought up by a GI motility specialist I am now seeing in addition to my normal GI, one being there is an autoimmune issue and the others are all genetic issues which can be contributing to my autonomic nervous system dysfunction (aka gastroparesis and POTS).
I also saw an adult rheumatologist for the first time this week. I really liked him and even though I am sad to leave my old peds rheumy I am glad I have found a good adult one. He is changing my diagnosis. Right now he put Undifferentiated Connective Tissue Disease (UCTD) in my chart but that will probably change in the near future when some of the test he sent me for come back. The first one I am having an about a week and a half is a lip biopsy to check for Sjogren's Syndrome. He said there is probably only a 10% chance I have it but it can affect the nervous system and if that is the problem treating it will not only help my autoimmune problems but also the ANS ones as well. He is also sending me for skin biopsies of sores I get on occasion but we have to wait for one to pop up before we can look into that and that would be testing for Behcet's disease. Lupus is also on the table, The last thing he did was look at the capillaries in my cuticles to look for signs of Rayaund's damage which not only did he find but he let me look at. While this is not important in terms of treating that condition it may be a symptom of another autoimmune disease such as lupus.
The last major thing that happened this week was some pretty serious new GI symptoms that may mean I am bleeding somewhere in my lover GI track. I was pretty freaked out when it first happened but it seems to be getting better so hopefully it will go away but I am getting some stool test to make sure nothing new is happening,
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